Hi I’m Karen I’m new here.
I was diagnosed in August 2021 with Rrms the day my first granddaughter was born.
I really have no clue about this disease.
I don’t google anything about it as I’m petrified🙈
But I know my body isn’t right.
I think I’m still in denial.
So any info tips are welcome.
Well firstly Karenclarkin welcome. We all feel the same as you when first diagnosed, but we’re all here to help, so stayed tuned.
Jean x
Hi Karen,
Welcome. You’re not alone there, I was in denial of having the disease too for the first 9 years, until it reared its ugly head again I thought I’d grown out of it.
By that time though, adult me finally accepted I had multiple sclerosis, but was still adamant I could keep it schtum for another 9 years. I was able to, albeit with occasional relapses/flare-ups, it stayed relatively quiescent or benign.
The last 5 or 6 years though have been trying and disability has become a lot more noticeable, but hey-ho as long as I remain positive and determined to temper this horrid disease as best I can, there really is no reason to be petrified of what the future holds for me. 
Stay strong,
JP
Welcome Karen.
It is quite daunting to be told you have multiple sclerosis but please know that there is so many people on this wonderful site and are always there to help with their very caring advice.
They have always been there for me and will be for you.
I am 16 years with MS and am still trying my best to keep the good side out.
Much love
Maryx
Denial can be a very good and ( I think) underrated coping mechanism. I certainly feel that on balance it has served me well over the years. Like everything else you can have too much of a good thing, but please don’t feel that you’re doing anything wrong by not choosing to spend your life reading up about MS. It will do its thing regardless, and hours on your part spent reading research papers won’t make a jot of difference either way.
Hi Karen, I think I adopted an opposite attitude to you and when diagnosed, some 18 years ago, learnt as much as I could . My advice is don’t just ‘Google’ , that will produce all sorts of stuff, but concentrate on reading everything on the MS Society Web Site and the same with the MS Trust. I also read through the Overcoming MS site - lots of suggestions on diet, exercise, mindfulness/ meditation - all of which are important.
Just go for it - read all the above and it will give you a much better idea of what you are dealing with plus, as you will see, the considerable advance that have been made in developing Disease Modifying Treatments and the research into Remyelination.
When I was diagnosed some 18 years ago I think there were just 2 Disease Modifying treatments compared to the more than 15 we now have many of which are significantly more effective than the early ones.
It is a scary disease but at 70 years old and after getting on for 20 years since diagnosis, I am still walking (admittedly not very far) and enjoying life. In my more optimistic moods I am able to convince myself that if I continue with the DMT, exercise, diet, relaxation/meditation/ mindfulness it won’t be too long before we have remyelination treatments and all will be well!
So, hang in there, learn as much as you can about MS ( from serious authorities) and do as much as you can to help yourself.
Hi,
I agree with Alison that denial is a valid response, and I certainly think I have avoided my MS becoming an all consuming hobby. As and when I pick up snippets of advice or info sometimes I will do a bit of research just to see if it could relate to me and how my MS behaves. You will know what works for you and your MS. In the meantime you have a family and new grand daughter to spend your energy on, I hope you all have some great times together.
Mick
Most of us rely on denial at some level, I think, to get by!
I do think it’s important you get yourself on effective treatment in order to improve your long-term prospects. Treatment choices is one time when it can be helpful to do a bit of reading.
Once that is sorted, if you can get on with your life, so much the better. We do have neurologists to do some of the thinking for us, after all. In your position I’d perhaps be enjoying time with my grandchildren, given the choice.
Thank you all so much😘
My heads just all over the place with it🙈
I’ll read up more about it only on ms sites.
Thanks again
Xxx
Hi Karen
I signed up for news on MS from ‘WebMD’, it’s an American thing but quite useful on MS News etc.
Yesterday’s e-mail from WebMD included an item on advice for the ‘Newly Diagnosed’. I know that you aren’t newly diagnosed but thought you might find the advice of some use :
Track your symptoms: keep a list and record if and when they change. Use the list in talking with your MS Nurse.
List your questions: for asking the Nurse/Neurologist
Educate yourself: know what you are dealing with, keep track of new treatments
Get treatment as soon as possible: early treatment leads to better long term outcomes
Tend to your emotions: when diagnosed your emotions and thoughts will probably be all over the place. Consider counselling
Recognise your triggers: what makes your symptoms worse. Stress and anger is bad and inflames the immune system ( meditation/ mindfulness can be good for calming mind and body)
Consider complimentary therapies in addition to your Disease Modifying Drug/Treatment
Try to build a good support network: ( this Forum is useful and there are also local groups in many areas)
Hi again @karenclarkin
When I was dx around the turn of the century, the internet was relatively still in its infancy, I opted for complimentary/alternative treatment to tackle multiple sclerosis and it suited me very well, I didn’t switch to conventional medicines until relapses/flare-ups became more frequent some 9 years later.
As @alison100 already mentioned, the disease will naturally run its course as there no cure as of yet, but you can take mitigating action now by having healthy nutrition and getting as much exercise as you can; recently that’s what I’m doing since deciding to forgo DMDs after 15 years.
Best regards,
JP
Toyally agree with you Hank.
I was diagnosed in 2010 (knew nothing about this disease, just how rough i felt) i’m now 40 and found i was less anxious the more i knew. I love the section on research on MS Society website, find it really encouraging.
There are many pod casts on MS and helpful vids on YouTube if you don’t have time for reading online articles. I just think being knowledgeable about symptom management and medicines/services available to you is better than not knowing.
Hello and yes. My Aunt had MS in the days before there were any treatments and not a lot to deal with symptoms. Ive a horrible feeling that the general advice was to rest and don’t exert yourself. My poor Aunt and her husband (RIP) just struggled along , getting steroids if she had a relapse but it wasn’t long before she was house bound and then bedbound. Most of that was in the days before there was so much easily accessible information and there was certainly nothing on ‘Disease Modifying Treatments’ and any notion of myelin repair etc. was just a pipe dream or not thought about at all. I’m not sure that MRI scans were available either. I think that when she was first diagnosed in the late 1970s knowledge of MS was ‘in the dark ages’.
I’m mighty glad and I guess feel very fortunate that now so much more is known about MS, that there are so many treatments and yet more in the pipeline and a lot of advice on diet, exercise etc.
Thanks Hank for that reply - even though I didn’t ask the question but encouraging none the less - I’m 56 and 20 years down the line since RRMS diagnosis but still on my feet as well - MS is with me all the time but certainly not the death sentence some folk think
Hi Karen - agree with all the answers on here - I’m 20 years down the line from diagnosis - 56 now but still doing relatively well - as time passes we learn to adjust our lives with the disease - try to stay healthy - bit of exercise & take vit D etc - there are plenty of folk willing to support